KCTV5 Investigation: Waiting For The Call

FAIRWAY, KS - There are 1,600 people in the Kansas City area who are waiting for a
life-saving call -- a call for a kidney -- a call that most of those patients
will wait many months to get, if they get it at all.
A new rule, designed to make the system more fair, could make it even harder
for some patients in desperate need of a transplant.
KCTV5 chief investigative reporter Dana Wright took a closer look at the
system that oversees the transplant process.
For patients in need of a kidney transplant, many things have to go in their
favor before they ever get called in for surgery. So many things, in fact, that
one expert likens the odds of receiving a kidney to a bullet hitting a bullet.
A new proposal aims to make the process better overall, but some older
Americans on the waiting list are not happy about it.
Melvin Bareiss, 77, must sit in a chair for the dialysis treatment that
keeps him alive until a kidney becomes available. The odds for Bareiss to get
out of the chair are long. About 1,600 in Kansas
and Missouri
need a kidney, yet only 200 become available every year.
Bareiss, a diabetic for most of his adult life, has been on the kidney
transplant waiting list almost a year and a half. He has a cell phone that will
ring if and when a donor kidney becomes available.
"I'm looking forward to a great life," he said. "There's not
a question in my mind when I get this transplant I'm going to do a lot of
living."
And while Bareiss said he is confident his call will come one day, he is
worried about other older Americans in the future because up to this point, the
system has given preference to the patients who have been waiting the longest.
But under the new proposal, the United Network for Organ Sharing -- UNOS --
would instead start matching kidneys in part based on age with younger donor
kidneys going to younger patients and older donor kidneys going to older
patients.
"That, I think, is the essence of what this policy change is really
trying to get at," said Rob Linderer of the Midwest Transplant Network.
"Can we match kidneys with their useful life expectancy with patients with
a similar life expectancy? And therefore the biggest bang for the buck."
The way Linderer explains it, a 20-year-old patient will get many more
decades of use out of a kidney from a 20-something donor. If doctors put the
same young kidney into an older patient, the patient likely won't live long
enough to get full use out of the organ.
The rule change is intended to ensure each donated kidney has the chance to
last as long as possible.
The rules for donations have evolved over the last 30 years, probably more
so in the last 20 years to the current rules. The proposal that's being looked
at now is taking all the information that's been made available about how
kidneys are allocated in different parts of the country. That includes how long
the kidneys last and how much useful life recipients are able to get from their
donated organs.
Yet there's no denying the proposed change would come at a cost to some
older patients on the waiting list. Experts said the best kidneys come from
young adults under the age of 35. Under the new proposal, younger patients
would get first crack at the best kidneys, while older patients such as Bareiss
would be more likely to end up with a donor kidney from a 50 or 60-year-old.
Bareiss said he would prefer the entire system be left u
p to doctors and not UNOS, which is contracted by the
federal government to oversee organ
allocation. He said he is relieved the proposed changes won't affect him. The
average wait time in this area for a kidney is one to two years and he's been
waiting for 15 months.
Under the proposal, 20 percent of the donated kidney pool would be reserved
for patients expected to live the longest after a transplant, the other 80
percent they would hope to match by age.
Everyone agrees there would be less of a problem if more people agreed to
donate their organs.